living well with hereditary pancreatitis, type 1 diabetes, and pancreatic cancer​

When I first found out I would have to do chemotherapy, I was terrified. I really had no idea what to expect. All I could think of was childhood memories of that ‘90s movie Stepmom, and images of head scarves, sunken cheekbones, vomiting, and smoking pot. It was only later, after I’d started chemo, that I remembered my childhood best friend’s mother, who died of breast cancer when we were both less than 10 years old. I didn’t know then that she was doing chemotherapy and I had probably never heard the word, but I can now realize that she must have. I have hazy memories of her in her last months of life, thin and weak in a bathrobe with a bald head. Who knows if my memories are even true, but what matters more is that “cancer” and “chemotherapy” conjured dark and scary images in my mind.​Although, a few months before my cancer diagnosis, in the middle of the painful and confusing complications that led up to that diagnosis, I read Eve Ensler’s cancer memoir, In the Body of the World. This book was transformational for me, since it gave me a strong and honest lens through which to view my own experience of illness. Much of it stuck with me, and when I faced the prospect of my own chemotherapy, I remember Eve’s words about her chemo, her port, her infusion suite.

“There is something about getting anything foreign inserted into the body that is both downright creepy and fabulously supernatural.”

This helped me, this made me feel proud of my port before I even got it. This made me feel, in some confusingly feminist way, that choosing to allow this foreign object into my body was a mark of my strength. And then about the chemo itself, her words are brilliant:

Her former therapist told her, “‘The chemo is not for you. It is for the cancer...Chemo will purge the badness that was projected onto you but was never yours...Your job is to welcome the chemo as an empathetic warrior, who is coming in to rescue your innocence by killing off the perpetrator who got inside you.’”

I repeated this mantra to myself as I prepared for my first chemo infusion: “The chemo is not for me, it’s for the cancer.” Before I knew what the Hopkins infusions pods look like, I took my imagery from YouTube videos of people vlogging their chemo days, and imagined myself sitting upright in a vinyl reclining chair, blankets piled up to my collarbone, IV tubes extending from me, and my palms resting face-up on the armrests as I accepted the chemo into my body. I talked to my own therapist about how to handle these vital moments, when the poison would be pumped into my body, and decided to repeat my mantra and visualize the chemo coursing through my veins, winding its way to my tumors, and engulfing them like holy drain cleaner.

At my first infusion, much of that flew out the window. I quickly realized that there was no space for that kind of quiet, noble dignity in Pod G. There was simply too much activity, too many people, too much noise. The outpatient treatment facility at Weinberg, Hopkins’ cancer building, is not state-of-the-art. It’s not even cozy. It’s uncomfortable and awkward and leaves patients feeling exposed and on top of one another. That first day, many people came to sit next to my supremely uncomfortable reclining chair: nurses, techs, a nutritionist, a palliative care nurse practitioner, and probably other people I don’t remember. The time passed pretty quickly. At the beginning, though, as my nurse was setting up my pre-meds, I nervously asked her if I should feel anything as the chemo went in. Months before, when I was in the hospital for what we thought then were abscesses in my liver, the potassium they put in my IV burned through my arm veins. I couldn’t imagine, then, how much chemo would hurt.

But she said, no, I really shouldn’t feel anything and it definitely shouldn’t hurt, especially with my port. One of the advantages of a port is that chemo doesn’t hurt going into large veins, even when the same drug does with a typical arm IV. She told me I might get a little sleepy, I might get a little queasy but probably not because of the pre-meds (Zofran and Dexamethasone, both for nausea), but I shouldn’t feel anything else. And then before I knew it, the chemo was going in, and I missed my crucial, poetic first moments. I think I even forgot my mantra, all five or so hours of that first infusion. It turned out I didn’t need it. At first, chemo infusion was easier than I thought it would be.

For the first two months of my chemo, I was able to hold onto my belief that I could handle it just fine, that it wasn’t really so bad, that it was nice to see the nurses and techs. I quickly became a pro at navigating all the little logistical details at Weinberg: swiping in with my orange card, taking a deep breath when they eased the curved needle into my port, unplugging my IV pole to tote it with me to the bathroom, looking up and smiling at the nurse every hour or so when she came to turn off my beeping IV pump and set up the next bag to drain. I was a #chemosurvivor.

But by April 18th, 11 weeks into my chemo, I really didn't want to be in Pod G. The sounds, the smells were too much for me. It was all rubbing alcohol, industrial plastic, and heparin, beeping, obnoxious TV, and fluorescent lighting. I wondered how the nurses and techs could stand spending so much time there. And I was so tired that day, it hit me in the waiting room. All I wanted was to be in my bed, not those awful "day beds" lining the outer wall of the pod. I just wanted to be with my husband and my dog, listening to the lovely silence in my home.

They scared me that day, too. This tech I'd never met before accessed my port and immediately said, "Whoa, whoa," when she tried for a blood return, frowning at the syringe. She called for my nurse and I asked if it was okay. She said there was a clot, and I looked away and slowed my breathing inside my paper mask. My nurse came over and squinted at my port hookup, but told the tech she could flush it. I breathed evenly and thought about my heart rate while she did, and after another flush, everything was running fine. But still, she did something funny with the tape and it kept pulling just next to my catheter under my collarbone. If I swept the tubing over my shoulder, it sat better and didn’t pull so much.

Starting sometime in early April, any time I thought of infusion or Hopkins or chemo or cancer, I could feel the saline rise up in the back of my throat. It never used to bother me, for, say, the first 29 years of my life. But suddenly, every saline flush by IV or port made me queasy. It was like a tickly ache, a sticky dryness, a sickening fur of chemicals on the back of my throat, and I couldn’t get rid of it. Maybe it was actually the heparin, I didn’t know. Whatever it was, I hated it.

And then after a couple hours of being poisoned, the pod started to smell like tacos, like ground beef and powdered taco mix. They let everyone bring in outside food, so the pod randomly smells like Balducci's salads and fried fast food, and that day, cheap homemade tacos with cold flour tortillas from a plastic package. It was vaguely appetizing, but not enough to overwhelm the saline-heparin fuzz. I really hated that place that day.